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Work plays a central role in our lives, providing us with a sense of fulfilment, personal development, and income. There are many decisions to make about employment for persons with young-onset dementia, including whether or not to tell your employer, what changes could be made to the workplace and how long to continue working.

The issues related to deciding whether or not to tell an employer about a diagnosis of young-onset dementia can be very complex. There are no set rules that will work for everyone. For many people it will depend on the extent to which symptoms affect their ability to do their job, the pace at which symptoms are progressing, and the support that may be required of (or that’s likely to be offered by) the employer.

There may be no impact on employment for persons with young-onset dementia at the early stages, although a person’s ability to do their work is likely to be affected over time. It is important for people with young-onset dementia to consider a number of options before making a decision about continuing with on-going employment and/ or informing their employer. 

Assessing the Employment Situation

  • Consider possible safety risks associated with dementia symptoms (for example, if operating machinery, being responsible for financial matters or driving work vehicles) and if there is a duty of care to inform an employer or clients receiving a service.
  • Allow time to absorb the diagnosis and don’t rush into any decisions.
  • Fully review all aspects of the situation before telling an employer.
  • Talk to family, health professionals and where appropriate, a union representative or anti-discrimination advocate about working conditions and health issues.
  • Before considering resignation from employment, seek consultation and advice about employee entitlements and rights.

It may be useful to consider:

  • Job satisfaction or work performance in the current role.
  • Access to staff counselling.
  • Number of years of service to the company.
  • Nature of the work you do, and whether changes associated with young onset dementia may affect others.
  • Ability of the company to provide support.
  • Relationships with peers and management.
  • Whether it may be possible to change or reduce duties or put in place supports that may assist in carrying out the job.
  • Available superannuation, death or disability insurance.
  • Availability of an advocate when interacting with the employer.

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Downloadable Resources

The following resources contain bite-sized information on The ABCDs of Dementia Progression that you may download and/ or print: 
Click on the images below to download in English.

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